Navigation

You are here

Grant's Story

by: Grant's mom, Sue

It's hard to believe that it's been almost one year since the general practitioner told me he thought my newborn baby boy had Esophageal Atresia, but September 2 marks the end of Grant's first year of life.

Grant was born at 38 weeks and weighed 5-lbs. 2 oz., and I think I knew soon after that something was wrong. I can't put my finger on it, but something didn't seem right. During labor we learned I had polyhydramnios, but otherwise I had a normal, healthy pregnancy and delivery. Grant kept choking and the nurses told us that he had probably swallowed some water during birth and that made sense to us. But when they took him away about an hour after his birth and I didn't see him again, I began to worry. My husband Jim had gone home to be with our 23-month-old son when I was given the shocking news that Grant was being transferred to St. Francis Medical Center in Peoria, which is nearly 70 miles from our hometown of Spring Valley.

I don't think I'll ever forget walking into the NICU unit that first time and being worried and ashamed that I wouldn't know which baby was Grant. I had only seen him a short time after his birth when he had been completely swaddled. It was a relief to read in the first newsletter we received from EA/TEF that another mother had that same fear.

The neonatologist told us over the phone that Grant also had a VSD and that they were going to check for kidney and liver problems as well. Then, for the first time, his atresia was referred to as a birth defect. That really hit home. I don't know what I had thought it was up to that point, but having worked at a center for children and adults with disabilities for 7 years, I never thought I would have a child with a birth defect.

Grant was in the NICU for 3 weeks and repogle and g tubes were inserted. He was diagnosed with true atresia with a gap of 5 vertebral spaces. Stephen Marshall, our surgeon, and Chris Ertl, the surgical resident, checked with hospitals around the country and decided to wait one month to see if Grant's esophagus grew on its own. It did, but not enough for the surgeon to connect it, so we waited another month with the same results. They wanted, if at all possible, to do anastomosis and colon interposition only if the first surgery failed. During this time, he was transferred to a special unit for infants and toddlers under age 2 on the pediatric floor. After 21/2 months at St. Francis, our neonatologist retired, and Howard Cohen, the head of the department, took our case. From the onset, he was shocked that Grant was still hospitalized and worked diligently on his release. In the end, I think he simply wore our insurance companies down until they agreed to pay for 24-hour nursing.

On November 13, we finally were able to bring our baby home! Grant had another esophagram December 20 and there had been no growth since the month before, so it was a question of what the surgeon would do. Jim and I had always hoped to have Grant home and repaired by Christmas, but this was not to be, and it was terribly depressing. We were notified by Dr. Marshall a few days before Christmas that he was scheduling surgery for the 27th.

I was petrified when we brought Grant for surgery two days after Christmas. He came through the operation fine; Dr. Marshall was surprised at the elasticity of Grant's esophagus and was able to connect it. I had thought about the surgery for so long and thought that once Grant actually made it through, everything would be easy. I was with Grant throughout the night following surgery and was concerned when the surgical resident ordered morphine (we had a new resident assigned in early November, but I wasn't comfortable with him or his decisions). I've watched too many of those news programs where people die from being given the wrong medication or dosage. I was even more nervous when the order was changed from every 3-4 hours to every two, but the nurse assured me this was quite normal. The next morning Grant was acting strange; we told the nurses this but they said his thrashing was due to the anesthetic. Shortly after, Grant's oxygen level dropped and within seconds, he turned completely blue, and I watched as the nursing staff worked frantically to get him breathing again. I thank God some residents and an instructor was making their rounds at that very moment and suspected he was having a morphine reaction. He was given a drug to counteract the morphine and was screaming within seconds. Grant had another episode with narcotics after being given Tylenol with codeine, and we learned the hard way that he can't tolerate narcotics. Grant was incredibly swollen after surgery and we went a week with him not urinating then being given Lasix. It was a continuous circle. Jim and I were about at the breaking point. I lost faith and began to fear he would never get better, and just then things turned around.

One week after surgery, Grant was given his first bottle-pure grape juice! He was excited at first and drank vigorously, but after he tasted it he refused to take more. There were no leaks (thank God) and with the help of a feeding therapist, he was drinking like any baby his age in a few days. Grant was released January 10 and he's eating solid food now. Dr. Marshall released him in May and he needed only 3 physical therapy sessions, so except for follow-up visits from the health department and hospital, we're on our own. In fact, at our first meeting with Dr. Marshall following Grant's release, he told us he never thought the surgery would be successful; he too thought it was a miracle!

Having heard so many other stories, we know how lucky we are that the anastomosis worked, and that Grant has had no further problems. We learned about the support group in December and wish we had known about it from the beginning. Just knowing there are people out there who have been through the same thing is comforting. We can't begin to thank everyone for helping us get through this. I know a lot of people think we should close this chapter of our lives and move on, but I want to use the experience to educate other families and give them hope. Miracles happen
every day, and people who don't believe need only look at Grant's smiling face!

Disclaimer: Your child's condition is unique. The information contained on this web site is not intended to substitute for advice from a doctor or nurse.